Connecting through the mutuality of madness

First Impressions of the International Initiative for Mental Health Leadership (IIMHL) 2013 by Darcey Jane

First, I’d like to thank the people who made my participation in this amazing experience possible. All the other people with lived experience without whom none of this would be happening; my manager, Marge Jackson, who encouraged me to attend; Te Pou for awarding me a scholarship to fund my attendance, and the people on my exchange, my peers, who made it such an inspiring and enriching experience.

In preparation for this conference I gave myself permission to do whatever necessary to get the most out of it. From experience I knew how overwhelming conferences can be, in particular being out of your usual routine and comfort zone. I was excited but proceeded with my feet firmly on the ground. I was most excited about the opportunity to hear and talk with fellow peers about their experiences and share ideas. My goal was to enjoy and learn as much as possible, contributing whatever I could.

The purpose of our exchange group was to initiate an international consensus statement about the parameters, principles and values of the peer workforce in the mental health system. It became obvious quite quickly though that there was a lot more to making this happen than just establishing some core values and defining work roles. Whether it was the people there, timing, some other forces, or all of them and then some, we didn’t go into debate about our beliefs and definitions or spend much time establishing a starting point. Our discussion was more focused on how to streamline the complex realm of the lived experience for consensus and achievable purpose. What was clear to me was the level of positive intention among the members present. With what could have (and has before) been very contentious, there seemed to be a common desire to converge to a place of shared goals, and this was evident by the commitment in the group. We had a discussion paper, prepared in advance between Gary, Shaun and Mary, to guide us, along with other background information from Dan, and Interrelate, the international coalition of peers. I found this very useful and aligned to beliefs and intentions I hold. It seems fair to say this was true for most, if not all, of the other members of the group.

When it came time to come to agreement on values and roles of significance to peer work, we soon became stuck. It seemed that the approach to defining a list of set values was actually unnecessary. Looking to the guiding paper, and other information (including the four tasks of intentional peer support: Connection, Worldview, Mutuality, and Moving towards), we soon realised that the essential elements of recovery to wellbeing already exist. They include (and are not limited to): hope; self-determination; mutuality and authentic connection; experiential knowledge; holistic responses; equality; and community participation.

We soon agreed that what was needed was more than one paper about peer work in mental health. We needed more of a picture of the wider system and the transformation we wanted to see, as well as the role of peers in that transformation. We needed clarity on the promotion and advocacy of a shared voice, and then advocate for the details of the work. These ideas were to be workshopped and then presented at the conference in Auckland and we were mindful of the importance of this opportunity to convey these ideas and present our recommendations.

The original background paper was updated with ideas from the two days of discussion and formed the structure to be used for the workshop, led by the desire for collaboration and inclusion. It really felt quite powerful, like the timing was right as the alignment and momentum was so strong.

A brief outline of the transformed system paper so far:

Purpose: to propose a process for transformation to a recovery and wellbeing-based system driven by the expertise of people with lived experience of recovery.

We are seeking IIMHL support and resources to develop:

A fuller discussion about the process for transforming the system

Regular reporting from member countries to indicate progress towards this transformed system.

We believe the system needs to be transformed from the current narrow, illness-based model to a recovery-based, community integration approach, with persons with lived experience of recovery being well-suited to drive this transformation.

The current structure of the mental health system is based on the belief held by the public and governments that persons with extreme emotional distress have broken brains and will never recover. Therefore the system is set up in a linear fashion in which persons in distress are the unidirectional targets of interventions and treatments that are designed and delivered by professionals [clinicians]. The primary intervention is medication directed at mental patients, now called consumers, who are not consulted as to their dreams and goals in this [clinician-centric] system.

The transformed system is based on the expectation that every person with emotional distress, labeled or not with a mental health condition, will recover a full meaningful life in the community. The experience of persons with lived experience of recovery is valued and listened to at all levels from the relationships/community, to treatment setting, to the provider level, to the administration level and to the government and back to community. This is the true meaning of ‘nothing about us without us’. This theme is depicted in the following two diagrams which show meaningful participation of experts by experience of recovery in recovery-based delivery of services as peers, in (re)training of staff, in evaluation of services and defining outcomes, in policy development, and public education.

The paths to a transformed system

Develop whole of government approaches to increasing population wellbeing, and reducing childhood trauma, income inequality and social exclusion.

Build peer leadership in our own recovery and in the development, delivery, management, governance and evaluation of services.

Reduce and eliminate legal coercion by replacing discriminatory mental health compulsory treatment legislation with generic legislation that authorises the conditions for interventions without consent on an equal basis with other citizens.

Replace all or most hospital services with community and home based services.

Reduce the dominance of [pharmacological] treatments and develop core services and associated workforces that are available to all who need them – including peer support, recovery education, housing support, employment support, advocacy and talking therapies.

Acknowledge the harm done within the mental health system; heal the trauma in individuals and in the system, and move the workforce towards trauma-informed recovery-based values and competencies.

Run ongoing recovery and human rights based anti-discrimination and social inclusion programmes, for the general public and target groups, led by persons with lived experience of recovery.

Recommendations

For peer leaders to lead the development of full discussion, and description of transformed systems, based on the above outline, in the form of a discussion paper prepared by people with lived experience and other experts who support our vision.Key tasks include a literature review, international consultation, drafting, peer review and publication.

IIMHL works with peer leaders to create an annual quantitative and qualitative reporting system among member countries where they can measure their progress over time and in comparison to each other in the following areas:

The percentage of the mental health budget spent on peer provided services

The numbers of people with openly acknowledged lived experience in senior administration and management roles

The percentage of the mental health budget spent on indigenous and ethnic minority services

The percentage of the mental health budget devoted to non-clinical community based services

Degree of participation of experts by experience in training, evaluation, policy formation, research, and public education

The numbers of people who have access to sustainable housing and employment

The numbers of people placed in seclusion and restraints (physical and chemical)

The numbers of people legally coerced in hospital and community settings

The numbers of people given ECT

Total national expenditure on psychotropic drugs

The percentage of people who complete suicide that are users or recent users of mental health services

Key tasks include an analysis of the available data for comparison over time and between countries, the development of indicators, the enlistment of national mental health administrations to provide the data, analysis and reporting on the data provided.

Sitting alongside this paper is another which outlines peer work in mental health as a core component of a genuinely recovery-based service system as well as an option for people outside the funded system. This paper aims to define the parameters, values, practices and challenges in peer work, and highlight this work as one of the key pieces of a transformed mental health system.

National and international consensus is sought on:

Defining the unique features of peer work

Peer ethics, boundaries and standards

Training curricula

Career paths

Peer practice tools

And a local and national level framework for developing an explicit consensus on:

Targets for increasing the peer workforce

Explicit contract requirements to employ peer workers

Tailored accountability requirements to suit the nature and values of peer services

Guidelines on the employment of peer workers

Programmes for preparing non-peer colleagues for working with peer workers

Note: The discussion papers are still in development so some details may change.

Where to from here

The outline of the transformed system was presented to the plenary on the last day of the conference by the representatives from our exchange (and the earlier work that contributed to it), Mary, Shaun, Dan and Jenny. Each gave a summary of the key points and presented our recommendations for moving towards a shared goal of a transformed system. We are asking for support to do further work on discussion papers and agreements to contribute to the transformation of the mental health system, through the collection of data, and development and support of the peer workforce.

Our challenge now is to move towards this goal in connection with other persons of lived experience of recovery, and our supporters, to grow from the enthusiasm that was present at our exchange. I hope we have some progress to report on in Manchester!